Caregivers cannot stop, fix or change dementia

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Laura Wayman
Laura Wayman

A Loving Approach to Dementia Care is a nationally recognized family and professional caregiver training program designed to improve the quality of life and increase enjoyment for people living with Alzheimer's disease or other forms of dementia within the assisted living/memory care or skilled nursing setting.

Based on the individual's own needs and comfort level, this customized dementia care training program creates a “dementia-aware” environment for those who have Alzheimer's disease or other causes of dementia symptoms, and it helps build a strong bond between staff and residents. It also provides a unique educational component for the family caregivers. This allows professionals to communicate properly with family members to help them set realistic expectations about what dementia care is, what it is not and what part the family can continue to play in the overall long-term care development.

I'm going to share a story with you about how valuable this approach can be for professionals, family members and people living with this disease.

***

My mother, Peggy, shared a magical life with my father, Jack. At her core, she was a natural caregiver, bringing in more than 20 special-needs foster children into our home and hearts. My parents loved each other very much. This was evident. Every day, my siblings and I felt their unconditional love, which reached into the lives of these special-needs children, too. My ever-so-determined parents decided to provide the best care for all their children, including their foster kids. Their mission: raise their kids even if it delayed their other goals.

Once the kids were all grown up, myself included, it was time for them to pick up where they had left off as younger lovebirds. The only difference for them was age. They decided to fulfill their dream as retirees, selling their home, buying an RV and traveling the 50 states.

Fifteen years into this blissful retirement lifestyle, however, my father began to show symptoms of dementia. It got progressively worse. That's what happens with dementia. It cannot be stopped.

It cannot be fixed.

It cannot be changed.

Dementia is like a powerful spinning top, spiraling uncontrollably, yet steadily. It bumps away anything that attempts to touch it, then wobbles a little before continuing its steady, lonely dance. And that's exactly what happened to my parents.

It forced them to reroute their journey, while the symptoms of dementia picked up steam. As my father's health declined, traveling the United States no longer was a viable way to live. They sold their cherished RV and never returned to the road, sights and landmarks of this beautiful country they had dreamed about traversing as a young, happily married couple.

They purchased a modest home, where once again, my mother became a caregiver. Unlike her previous life, however, her primary partner in providing care switched roles. My father was now the subject of the undivided attention required to care for a person with dementia. And for all the gifts and compassion my mother possessed as a natural and loving caregiver, it wasn't enough. She wouldn't make it through this.

“No, no, I can do this,” I recall my mother telling us. “I don't want you to stop your lives. Jack and I want you to live your life. We would never ask you to come help me.”

At the time, I didn't think much of her rejecting help. After all, here was this strong woman who always worked hard on her own. The woman who decided with her husband to care for multiple foster children with special needs. If anyone can care for our father, surely it was her.

One night, she was home with Dad. As always, she made him a delicious dinner. They were alone.

Sometime later that evening, my mother suffered a massive heart attack. Because of my father's advanced dementia, he didn't know what was going on; he was unable to recognize the emergency. In his unsettled state of confusion, he wandered outside. He eventually told the neighbor my mother was sleeping on the floor. By the time help arrived, my mother was gone.

Of course, I was devastated as a daughter, but also as a trained gerontologist and a professional working in the field of senior care. The guilt and shame washed over me — why did I not do more to help my mother? Why did I not recognize the negative effect this was having on her? And I, to this day, still feel frustration that there was no “dementia-aware” support around her from nearby medical or other dementia care professionals. 

That was many years ago, yet to this day, I believe that I could have saved her life had I recognized that there was a devastating outcome pending because of a dangerous lack of awareness for the caregiver. I could have prepared her for what led up to that fateful day. I could have saved her life had I known what I know now about the arduous journey of caring for someone with this dominating disease. And I would have given her the permission to actively seek the help she needed, gently guiding her to the acceptance that it takes a multitude of caring individuals to properly care for any individual with any cause of dementia.

Often, caring for someone with Alzheimer's disease or any cause of dementia becomes too difficult to manage by one family member in a home environment. In these cases, choosing professionally trained in-home or out-of-home dementia care that provides innovative and dedicated programs to help manage the symptoms of the disease, and celebrate the life of the individual, results in saving the life of that primary caregiver as well!

It is now my life's mission to help people like my mother.

I provide support and education for family and professional caregivers who are about to embark on a very difficult journey, one that is stigmatized in society through “dementia denial.” Because dementia is related to mental health, many people are unable to speak candidly about it with the understanding of what it really is: an unstoppable regression and deterioration of the mind. Because our society isn't fully dementia-aware, those who are living and caring for people who have it are left in the dark. Our inability to understand this disease seeps into the consciousness of the caregiver, who in turn is unable to provide the proper care. They feel shame in asking for help.

Dementia is a silent pandemic. The overall effect on those caring for people with dementia simply can be devastating. In fact, a staggering 68% of those who provide care for those with dementia, without the proper help of others, die in their roles as the caregiver. It takes a special kind of understanding of its process to care effectively for those suffering from this unforgiving disease.

“I can't stop, fix or change the progressive dementia devastation,” I repeat to myself internally, hoping those I coach will do the same.

I teach family and professional caregivers to realize the scope of the disease — that it progressively steals away everything inside the person's mind forever. Once they know and understand this, they will be able to walk through the journey and find some fulfillment and solace.

My method and teaching works, but only in the moment. Part of this understanding is accepting that something that “worked” today in our life as a caregiver will not necessarily work in the future. We must constantly understand that it's only in the moment.

As an example, a smile shared between the caregiver and the person with dementia must be savored in that moment. And it's possible that whatever we did to convince the person for whom we care to bathe may not work tomorrow. When a caregiver is unable to motivate a person's behavior, then it's always mentally wise to remember that dementia is something we really have no true control over. We can manage it only in the moment. And that can be frustrating.

The best way I can convey my philosophy of dementia care is to say that caring for someone with dementia is like a quilt. Different pieces of fabric are sourced from different places. One piece may come from in-home care, another piece of fabric is provided by a grandson who comes over each Wednesday and another is added by a medical professional. The intricate and intimate quilt is never complete, because the needs are always changing.

During this journey, it becomes necessary to add more pieces to the quilt to maintain any level of care that brings fulfillment in the lives of those involved. Each quilt piece represents a moment that brings meaning to our lives and those we care for. Each meaningful, purposeful and fulfilling connection we build are triumphs, if only in that given moment.

While caregivers are reminded of the steady and inevitable decline of their loved ones, they must transform their dementia perspective into realistic expectations that help them understand that there's only so much they can do. And in that, there is relief and release from the overwhelming burden of trying to stop, fix and change something that is unstoppable, unfixable and unchangeable.

When I travel across the country to speak about dementia care, it's difficult to not think about my parents' adventures. I would do anything in the world for my mother to still be here, traveling in her RV next to my dad. My mother, unfortunately, didn't approach the care with a clear understanding and the ability to enjoy the small “moments.” The stress and demand is too heavy a burden to carry alone without proper awareness.

I hope that we can all have more of an understanding of what dementia truly is and what can and can't be controlled.

Discussing dementia is difficult, but not discussing it could be deadly.

Laura Wayman is the author of A Loving Approach to Dementia Care,” (now in its second edition, a 36-Hour Day Book), published by Johns Hopkins University Press. She holds an Associate in Arts degree in gerontology and is a certified social services designee. She has more than a decade of experience in and a strong dedication to quality aging. She is a professional dementia care consultant, trainer, the CEO of The Dementia Whisperers and a speaker on dementia and issues of aging.

McKnight's Senior Living welcomes marketplace columns on subjects of value to the industry. Please see our submission guidelines for more information.

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